I have had Hyperthyroidism since 2016, been predominantly on Carbimozole during that time. Due to my Endocrinologist having a stroke prior to Covid and then Covid happened, consultations were cancelled and I was unmonitored for the best part of 2 years as consultations were always cancelled/moved to later dates.
Long story short, I moved back to Kent from Essex and came under the care of Endocrinology at my local hospital at roughly the same time as having a flare up of my condition, a dramatic loss of weight and trembling, irritability, unable to focus.
Although my blood work has been closely monitored by the one Endocrinologist at the hospital, which has helped, as I have stabilised and my Carbimozole is down to 15mg daily and symptoms improved. I am finding it very difficult as whenever I have consultations, I am being leaned on/pushed to have Radioactive Iodine right now while I am stable, even though I have said several times this is not the treatment I want for myself. I was then added to the waiting list and told my next option must be a full Thyroid removal as it is ‘not an option’ to remain on Carbimozole.
I am finding it increasingly difficult during these consultations as despite my saying that I would like to check my vitamin and mineral levels and try to reduce my Carbimozole whilst being monitored, I am met with eyes rolling and being asked why I am against Radioactive Iodine and why I want to try to monitored vitamin and mineral levels (just take a Vitamin D supplement and try to get a little sun) whilst being told that is not something within her remit and I must go back to my GP if I have any concerns or want any deficiencies checked.
My question is, what is the best course of action if you feel that the Endocrinologist that you are seeing, is a) not listening to you and b) is becoming increasingly difficult and appearing to lose patience (eye rolling, disregarding any concerns I may have, as I am not just agreeing with her approach?
Thank you in advance for any responses.
Written by
Kjones64
To view profiles and participate in discussions please or .
I had Graves in 2012/13. Right from my second endo visit - When the block and replace treatment my hospital used started I had levo added in but I kept taking the 40mg of carb through the treatment - I was told that should I relapse it was RAI for me - I told that doctor and every doctor I saw from then on that I had no intention of having my thyroid destroyed, however that didn’t stop them bringing the subject up. I was very well when taking carbimazole
When I was discharged I thought about it for a few days then went to see my GP.
I asked if I could be forced to have RAI - and if I refused could the hospital refuse to treat me and the answer to both questions was a definite No.
So I went off home and relaxed about it - stress not being good for people in remission from Graves.
I did go completely gluten free two years later when I developed inflammatory arthritis - yet another autoimmune condition.
I did home finger prick blood tests and discovered that my thyroid antibodies has reduced - I did them regularly and my antibodies continued to drop - they are now very, very low. It could have been going GF that did it or maybe it was just time for then to drop.
I still follow a totally GF diet because being GF made a massive difference to my IBS.
I used to have a lot of evidence of people who had been taking carbimazole for long periods of time - I collected them as evidence as to why I wasn’t going to take it myself. Unfortunately that was a long time ago but I’m sure if you Google you will be able to find it and also there are people on here who have taken it long term.
My own theory is that as long as you take carbimazole you are kept on the endocrinologist’s list - once they’ve wiped out your thyroid gland you can be chucked out to the mercy of your GP who may or most likely may not be good at dealing with your thyroid problems so it is in the hospital’s interest to get rid of you. I did say to my GP that if I had thyroid cancer I would of course reconsider but other than that I wanted to stick with carbimazole.
Just Google for papers and articles written about long term use of carbimazole and save them up to take with you as evidence.
I've never been hyper so i'm only relaying what i've learned from others on here .... but if you decline RAI/surgery then , whether the endocrinologist likes to admit it or not, it IS an option to say on low dose carbimazole, forever if necessary (unless you get that liver reaction to it, but the chances of that happening do not increase the longer you are on it, the chances stay the same as they always were ) They have no choice but to continue prescribing the carbimazole and monitoring you , or possibly transferring your testing to the GP if you are stable.
They won't like it , and you may find that even with a different endo ,there is no way to avoid the constant pressure to get 'definitive treatment' because presumably the endocrinology dept. are under immense pressure to get people off their consultant list , and off their budget ,and RAI / surgery option will do that ... but that's their problem, not yours .
There are a few people on here who have stayed on low dose carbimazole for a very long time.
I can only go on my own experience after receiving the radio iodine treatment which is my life has basically been a living hell!I wasn’t given any options I was just told that the radio iodine was the best form of treatment,which the endocrinologist tried to deny yesterday by insisting he would’ve gave me three options,a down right lie!
Here’s a link to one of the studies I found done on patients after receiving the radio iodine treatment.
Hello Kjones and sorry I missed your first post and so a belated welcome to the forum :
So were you diagnosed with Graves Disease and do you have the medical evidence of an over range and positive TSI or TR ab - the unique antibodies for Graves and do you have your first blood test at diagnosis showing T3 and T4 results and ranges?
Just as an aside, if your neutropenia are low, ( mine were at 4 when I started Carbimazole ) it should be monitored by the medical team treating you, and there is the option of Propylthiouracil - PTU - for short - an ' older ' Anti Thyroid drug that is well tolerated :
Graves is an auto immune disease and said to be stress and anxiety driven, and there is likely a genetic predisposition, and something has triggered your immune system to go on the attack.
When the thyroid is attacked the symptoms can be diverse with some seen as life threatening and why you are monitored by the hospital.
Switching you to hypothyroidism through either RAI thyroid ablation or a thyroidectomy simply means you are then discharged back out treated in primary care as you no longer can " go hyper ' as you will not have a thyroid and mainstream medical believe hypothyroid is much more easily treated out of the hospital and in primary care.
Well I haven't found any of this to be true : details on my profile :
My situation was long ago before the current O/P back log and the pressure on hospitals to reduce, rather than extend treatment and generally speaking most medics follow the hospital guidelines.
I had RAI thyroid ablation in 2005 an now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism and am self medicating as I have been denied any support other than T4 - Levothyroxine.
You might like to read around Graves Disease, if this is the cause of your ill health and I believe the Elaine Moore Graves Disease Foundation the most well rounded of all my research.
During this phase of Graves you'll likely be having trouble extracting your essential, key, vital nutrients through your food, so you need to arrange for ferritin, folate, B12 and vitamin D to be run as these need to kept optimal levels and if you share the blood tests you will be advised accordingly.
Just a couple research papers below that you might like to keep under your pillow until the next hospital appointment to just use as ammunition if you need to :
hello there, I have graves since 2018.I have tried carbimazole only and now I'm on block and replace.I have never been in remission.Tried once and badly relapsed within 2 weeks.I also have activeTED.I am now awaiting a thyroidectomy, but that is my choice.I can't have RAI due to thyroid eye disease but I would have refused anyway.As others have said, they can't force you into treatment and you have to sign a consent form.Everyone is different and you should choose the best treatment for you.I suppose I am lucky as I was only told the 3 ways of treating graves at my first endo appointment and it hasn't been mentioned since except by me.Good luck with everything.
Many are refused full thyroid testing and nutrients. Often only way to make progress is to use private blood testing companies. This can be done by fingerpick sample & via post.
Many supply bundles including the test you need. In full you need TSH,FT4, FT3, TPO & TG antibodies. Nutrients folate, ferritin, B12 & Vitamin D.
Was Trab or TSI tested to confirm Graves if suspected.
What’s has been tested?
What are your current levels?
Doctors will accept any results that are in the normal range - that is not the same as optimal (for nutrients) or normal for you, where thyroid levels are concerned.
Doctors tend to focus on TSH. My TSH remained below range after being found hyper. So even when my FT4 & FT3 were scraping the range the TSH did not rise. (I have a hyper nodule not autoimmune)
If you are well on carbimazole don’t be pushed into a irreversible treatment. The specialist arranged RAI for me immediately following my first appointment. I delayed it so last year they discharged me back to GP as they “didn’t want me on the books” which is what she said.
I’ve come to the conclusion this motive behind it, monitoring hyper by specialist is expensive. It’s much more efficient to treat hyper as they view hypothyroidism easily treated by GP.
NHS set a limit eg 18 months on carbimazole treatment. Doctors often imply it isn’t safe after that. Unless a pandemic keeps them busy - then it’s not so important. The medication does have very low risks including serious side affects, the risks are the “same” today (possibly less) as when you started it it does not accumulate damage/risk with use.
The serious risks are not routinely monitored for eg liver function or full blood count. So it’s a serious enough risk to limit carbimazole and treat definitively but not serious enough to carefully monitor for.
If you ask your doctor what the % level of risk is they probably won’t be able to tell you they will just say you can’t remain on it.
Liver damage risk PTU 1:10,000 for adults (carbimazole is lower)
carbimazole induced agranulocytosis is placed at 0.3–0.6%
“The incidence is certainly less than one in 500 and is possibly as low as one in 3,000”
British Thyroid foundation patient information leaflet antithyroid treatment long term.
“In theory there is no reason why not, provided your thyroid gland remains well controlled. It will initially involve regular clinic visits and blood tests every six to 12 months, under the supervision of a specialist, as doses may continue to need to be adjusted. Once you are stable on a low maintenance dose you may be discharged for follow-up by your GP. You will, however, remain at risk of side effects. Many people feel that radioactive iodine is a more straightforward solution.
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
This is interesting as my last check up I was told if it's going up again they would look at this radioactive treatment
I will know in a few weeks
Luckily I have more time as I mentioned we are planning for a baby in the next few years so he said you can't have the radioactive treatment as you can't get pregnant in the next year so he said if my thyroid goes overactive again they will use medication instead and keep me on this for a few years, then if pregnant I would be closely monitored (So phew that sounds like I am in a good area for endo)
But it does sound like in the future if it does keep going high they look at this radioactive treatment. If you are female and child bearing age you it is important you let them know as it will change the treatment options. I've even read some women who have a baby don't have this as you have to isolate from the baby for some weeks!!
Please think about all this - you were ' only mildly positive ' if I remember rightly:
Your Graves will likely burn itself out given time - though the medical mainstream seem to like quick fixes - Graves is an auto immune disease and as such for life, there is no cure, whether mildly hyper and fully hypothyroid which is as disabling and in my opinion worse.
and there are many forum members who have been on AT drugs for very many years and just pop a pill or two when " life " stressors get in the way and they feel their thyroid running a bit too fast.
You too can have these links - just wish they were around before I had RAI thyroid ablation back in 2005 :
Huh that's what I am saying I don't want the RAI it just seemed odd it was mentioned as I thought that's only if it keeps going high not just one relapse. I think you may have miss understood, they say I would be given medication and not the RAI if it goes high again as this could mess up pregnancy plans. So don't worry they seem to be nice and are not saying I have to have the RAI What I was implying on if anyone is female and they discuss this with the endo they should take all this into account and it sounds like they look to use medication instead
No that's the impression I got! But there is no point thinking about the options yet as atm I am within range, and there is no point worrying about something until it happens then if it does go high I will think about it then, But for now we know if it goes high I would be given medication. (SO for eg being 36 the next 4 years we know I would not be put to look at RAI)
If doctors are really like that pushing for RAI I was just implying well if you are female surely you can be like er no what if I want a baby in the next 10 years there you go I am not having RAI. Personally I don't think any doc should push for anything - they give you the options then you can choose yourself. If people do their own research then it is up to them!! From what I know after RAI it can go too far the other way then you still need meds afterwards anyway.
I'd ask to see another opinion if that happened, mind you 15mg Carb is high I was down to 5mg so I can understand that there would be a concern to be on 15mg long term. Everyone is different, but to be met with eyes rolling at least they are seeing someone face to face. I've only ever had phone calls. Mine say the same you don't need vitamins tested, I bet they get asked that loads they are just giving the correct info - it is not standard to test this. I'd ask them to reduce the dose of Carb and get stable on a lower level more long term Kjones64 and stand your ground. You need to ask for evidence of why they want a total thyroid removal, full implications etc verses a reduction of Carbimazole as normally it's 12-18M then you come off this med - then you may be ok your thyroid may not go high again for some more years.
So, yes that is all fine and well if a woman of child bearing age.
After RAI you will eventually become hypothyroid and be on medication for the rest of your life and to have any QOL likely need to self medicate and take full spectrum thyroid hormone replacement as routinely this is not available on the NHS any longer.
NHS doctors follow the hospital guidelines if they want to keep their job and RAI is still seen as the first treatment option to be offered and encouraged.
Yeah I know my Grandad had it, they zapped too much and I am told he needed meds ongoing after that. Apparently because that was in the early days of using it and they didn't know as much about the levels.....I get the impression it is a normal reaction though and at the end of the day it is about money and what is easiest to treat / monitor - also if left hyperthyroid more risk of a thyroid storm so down to risk analysis?
At one point when one of the endos I saw (big teaching hospital so never saw the same in the year I was being treated! ) a young girl, was trying to persuade me and I was saying ‘no thanks’ she held up her thumb and index finger to show me that it was ‘just a teensy, tiny little pill’. Then when I said I did not want it because I did not want to become hypo she actually said I wouldn’t become hypo! I mean honestly!
Somehow or another I think there’s a very good chance that no working thyroid might lead to becoming hypo. Anyway, I still said no.
In the meantime while I was being offered all this, I hadn’t ever in all the time I’d been treated had my T3 or vitamin D tested. Which is why I started testing my own at home.
Once I was discharged, if and I mean if, my thyroid is ever checked all they test is TSH even though one of the practice nurses said I ought to be having T4 tested too - T3 was obviously totally out of the question.
she held up her thumb and index finger to show me that it was ‘just a teensy, tiny little pill’.
Why do doctors do this? It's insulting and demeaning. A woman with a thyroid problem isn't a toddler that needs to be cajoled into eating her greens. Someone can do poorly with a pill of any size.
I wonder how big cyanide pills are? Do they kill people less if they happen to be the same size as Levo pills?
I know, I did think it was hysterical to think that she might have though I was worried about the size of the blooming thing. For goodness sake!
Obviously didn’t seem to occur to her that I might not have fancied the radioactivity of it all never mind being left minus a thyroid gland - her comment about not becoming hypo worried me most. Did she genuinely think that or was she just telling a lie ti get me to take the tiny pill?
Thank goodness for TUK and the fact that in general I’d say we’re a pretty feisty , knowledgeable bunch who think for ourselves and aren’t prepared to lie down and be intimidated by doctors. 😉
My MIL had RAI a few years ago and has regretted it ever since, she's one of the few hyper patients that had weight gain not loss, and honestly I was so surprised when she told me she was hyper.
She's always struggled with her weight and I often wondered if she had an underactive thyroid. As well as other symptoms like hair thinning. She's never felt right since her procedure and has just been left by the Endos at the mercy of her totally crap GP surgery. I don't even know if she's on Levo or anything. She's got a very poor QOL. Feel really bad for her 😪
I had all my treatment at the only hospital in Cornwall but I too never saw the same endo twice.
When i asked the question the reply was simply that they are all just on rotation for around 6 months going around various hospital departments.
I was left with this image of whirling dervishes - no continuity of care what so ever :
PS. Looking back i can see so many ' cracks in the service " but at the time, when not well and in shock , I simply trusted the doctors knew best and being dyslexic I couldn't see myself in the library reading up anything in 2004.
The funny part of it was that just after I’d had my first consultant visit I met soje9ne I knew what had been attending the same dept. I mentioned that I wasn’t all that keen on the guy I saw - he went on about how well qualified etc he was and I had the feeling that had my husband come in with me he would probably have spoken to him rather than to me. Anyway when I said that she said quite gaily ‘oh don’t worry about that - you’ll never see him again’. Sure enough she was right. I used to trust doctors to a certain extent - I’m afraid I definitely don’t now and I’m the biggest cynic around which is kind of sad in a way isn’t it.
Hi Kjones64. Check out the Anthony Toft paper: Thyroid Hormone Replacement-A Counterblast to Guidelines”. Anthony Toft is the ex-president of the British Thyroid Association it is interesting/affirming to see his take on things. He does refer to radioactive iodine treatment. My mum had radioactive iodine treatment in 2018. She was perfectly fine on Carbimazole and although we checked and found out she has the DIO2 polymorphism she eventually bent to pressure from the doctors and now struggles along on Levothyroxine. Last summer at her annual thyroid check her TSH came in at 5.37. It slipped under my radar as I was not well myself at the time. By the Autumn she was really struggling. When I rang her surgery to ask for an increase in Levo they said her record said “no action” against her summer result. I pushed and got another blood test. By this point her TSH was over 10. I still had to push for an increase!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What I was implying on if anyone is female and they discuss this with the endo they should take all this into account and it sounds like they look to use medication instead
Blood results in - don’t understand what’s going on with my body! long
Moving to Greece, whole thyroid options please.
So over the NHS approach to treating thyroid disorder. What are my options now please?
Taking Hydrocortisone with NDT - Endo suggesting it’s the final option
